Tuesday, July 28, 2015

Change of Plans

What an interesting week this has been. I guess you could probably call this Passport drama part three.  After all the work and runaround to get passports for Colby and Landon, we ended up having to postpone our cruise at the last minute because Dallin ended up in the hospital.  The irony of it all is a bit interesting if you ask me and I secretly keep checking the news to see if our ship blew up at sea or anything like that.  So far, no.
On Monday, I went in to get a root canal and a temporary crown and I took Colby to the foot doctor and learned that he needs foot orthotics from Dr. Scott.  Then on Tuesday, Jason learned that while he was planning on changing jobs on Aug 1, his old boss wanted him to leave on Tuesday.  It was actually a relief for Jason, but is still quite stressful.  (Especially since his old work's Lagoon day was Wednesday and had the potential to be very awkward- but we focused on celebrating Grandma T's birthday and it worked out okay.) Wednesday was also the first day that Dallin had a fever. I was a super good mom that day and gave him ibuprofen and drug him around Lagoon anyway. Oops! He did actually go on rides and alternated between sitting down and resting in the middle of Lagoon and going on rides and having fun.
Anyway, the rest of this post is all the medical drama of this week, so if you're not a nerd like me, feel free to stop reading.  Just know how grateful I am that everything is going to be okay, all of it, always.  Things work out and we always have more to be grateful for than to complain about.
So on Thursday, I was living life as usual and had gone visiting teaching.  I knew Dallin wasn't feeling well and had a fever, but he was taking it easy.  When I got back around lunchtime, he was complaining about his neck, and as I checked it, I discovered that the lymph node on his left side was about the size of a bouncy ball.  It was huge, and there was no definition between his jawbone and his neck. I called the doctor, and we headed in. (Meanwhile, back at the ranch, my brother Jared was arriving from Minnesota for a visit and we were having a BBQ at our house that night). At the doctor's, he prescribed an antibiotic because of the possible infection in the lymph node itself and he ordered some blood work to check for Mono and some other things and we learned that he was negative for strep.  As I was sitting him up on the doctor's table though, we noticed this weird rash on the inner part of his legs that didn't resemble any disease or reaction and wasn't bothering him.  So we got the blood work, picked up the prescription, headed home and put him to bed. Around 11 that night, he started complaining about the rash and I noticed that it was all raised. Weird.  Then at about 2 in the morning when he was throwing up, I noticed the rash was spreading.  Here is a freaky picture of it.
So I am now on Google in the middle of the night looking up scarlet fever and other weird rashes and I don't find anything.
Friday morning, he is feeling the same with the fever, around 104 today, rash, bloodshot eyes, swollen lips, and nausea and vomiting and not and wanting to move around or walk. We had Brother Partridge come over and help Jason give Dallin a blessing. I call in to the doctor about the rash and they order a steroid cream and are wondering if the antibiotic is making the rash worse.  Jason stayed home and took care of him and the rest of us went up to the Deer Creek with my brother and family and had a great day.  I tried paddle boarding and loved it, but of course I feel guilty about all that looking back now.  We picked up Amanda on the way home and brought her to our house too. Dallin was the same when we got back, and he threw up a couple more times in the night.
Saturday, day four of the fever, more vomiting, his eyelids are even red now, and he is having difficulty walking. We keep trying to get him to drink and stay comfortable. I went to a Relief Society activity for a bit and Jason took him over to our friend Cami who is in PA (physician's assistant) school right now. He was actually going to get some suitcases from her because we were supposed to leave for the cruise on Sunday night, but Jason thought she might want to look at Dallin while he was there.  About an hour after that, Cami has done some research and called a PA she works with, sent her a picture and they both independently came up with a concern for this weird disease called Kawasaki.  Never heard of it.  But I learned that it is an inflammation of the blood vessels in the body and can lead to heart damage, so we need to follow up.  What??!!  So I take him into our pediatrician's office again and the PA feels so bad because he didn't realize how bad the rash was. After consulting with another PA there and the doc on the phone, they decide to send us up to Primary Children's ER to have him checked out for this Kawasaki disease. At the ER, they have to get a wheelchair to get him to his room because it is bothering him too much to walk. We then spend the next 8 hours doing blood work and an x-ray and ruling out things like mycoplasma pneumonia, rocky mountain spotted fever, scarlet fever, allergic reactions and a bunch of other stuff. Three different doctors come talk to us trying to figure out if this is Kawasaki or not.  The real problem is that a defining characteristic is 5 days of fever and we are on day 4, and his rash looks a little different and he is older than the usual patients with this, and his tongue and mouth aren't as inflamed as usual.  And then to throw another kink in things, Jason, Colby, Landon and I are supposed to be leaving on a cruise in less than 24 hours.  If he just has a virus, then he can be kept hydrated by my mother or sister, but if he has Kawasaki and has to go into the hospital for two days of treatment, then I'm not going on the trip. Ugh, what to do, what to do?? At ten that night, we finally decide with the doc to take him home and if he has a fever to bring him back on Sunday.  I take him home and he is nauseous and throws up almost the whole way home, but he does actually sleep the whole way night.
On Sunday, I literally debate for hours.  I finish getting the girls packed and send the rest of the people except Madilynn off to church.  His rash is a little lighter, and his eyes and lips aren't quite as red, is he getting better or not??? He's definitely not eating or drinking like he should. I take his temperature over and over.  I take it in his ears, I take it in his mouth and under his arm with 3 different thermometers. And most show fever, but some don't and I don't know what to do.  Do I pack up for the cruise? Do we take him into the ER? We say a prayer with our family and decide that by 2:10 after Sacrament Meeting, we will decide for sure.  During that time, Melissa and Jared come over, look at Dallin, take his temperature again and kick me out on the way to the hospital.  I hope y'all don't think that I was trying to put a cruise or money in front of the health of my son. It's just that with my education and with being a mom for 17 years, I know that there is nothing they can do for a virus except keep him comfortable, and I just didn't want to overreact.  We even joked with Dallin that if they didn't figure it out then he could name his illness after himself. : )  At the ER, the same doc looks at him and agrees that while he looks a little better, he does still have the fever and his heart is racing and they want him to be checked in the hospital and treated for Kawasaki.  Decision made.  We're staying home and taking care of this little guy.  They start an IV and give him a big 900cc of fluid which he apparently really needed because he didn't go to the bathroom for 5 hours afterwards. They eventually move us upstairs into a room, Jason gets to the hospital, Grandma and Grandpa Morton come and visit, and roughly at midnight, they start the aspirin therapy and the IVIG which is the standard therapy.  Jason sleeps in the bed provided and I climb in by Dallin and we try to sleep a little.  It was a long night.  We even read a bit of Harry Potter at 4 in the morning to try and wind down. I should mention as well that one thing that was bugging me the most was his eyes.  He couldn't open them all the way and they were red and sad.
 
Monday the team of doctors start to come in and evaluate what's going on and start explaining stuff.  The IVIG has a waiting period after administration to evaluate for any side effects.  While they are administering it, since it is a blood product, they have to check on his vital signs a lot.  After the infusion is done, they have to watch him for 36 hours, and then if he has any fever, they have to give him another dose, but hopefully not.  On Monday morning, Melissa and Jared and Amanda come up and bring plenty of laughs and brush his teeth and read him Shakespeare and the like.  He loves the toy and joke that comes with breakfast, being able to order whatever he wants, likes the X-box and movies and all the other "free" stuff. He is able to walk quite a ways away down to the echocardiogram that they do in the afternoon and it comes back clear.  Things are looking good for us to head home on Tuesday.  We actually even sleep quite well that night with not many interruptions. Traci Palmer and McKennah come to see us and bring an amazing frog balloon and Cami stops by and brings minion stuff and Grandma and Grandpa Webb come too.
(The important parts of the picture are Dallin's happy, but red eyes, both Shakespeare and Harry Potter being in the picture-family joke- and weird Uncle Jared from Minnesota)

Tuesday starts off okay, but he doesn't seem to have much of an appetite.  By afternoon, he is much more sluggish, and I am begging him to eat.  He has cried a few times and wants to go home and asked if Colby was old enough to drive his family up to see him.  Colby was actually able to come up and watch some Pixar shorts with him around lunch and that was a tender moment to watch. I had a moment of breakdown too this morning and called my friend to talk things through.  In the waiting period around 4 when Dallin is not supposed to have a fever, the docs come to look at him and he is so sluggish that he falls asleep while they are talking to him.  They are thinking that they should watch him another night. Ugh. At this point, I feel like I could watch him at home, but then the tech comes in and checks him and and he has an actual fever.  Okay, that is a problem. The doc comes back in and says that they need to do another dose of the IVIG and wait another 36 hours afterwards. He needs this second dose and I get it, but he's going to be devastated.  However, right at that time Brady and Jessica and Ryker show up with Raylie and Madilynn!! (and some Legos and chocolate, I might add). It was so good to see my girls, and I have missed them so much.  (Missing the cruise had some serious benefits though in that all the other kids were taken care of because they were already headed to Jessica and Melissa's house for while we were gone.)  The girls were cute and sat by Dallin and Madilynn was so stinking hyper.  Then Melissa showed up with the rest of the kids except Colby and London, and this cheered Dallin up considerably.  They watched Pixar shorts and ate popcorn and listened to Weird Al Yankovich and he felt better about things.  One frustrating side note in all this was that in all the testing, Dallin ended up having rhinovirus as well, which is the common cold.  So that meant that he wasn't allowed to leave his room or go to the playroom or outside and all the docs and personnel had to wear masks when they came in.  I don't think he'll ever know what any of his doctors or nurses actually look like.  So it was great for him to be able to see all of his family.  When I told him that he had to stay, he just cried.  He didn't even want me to read Harry Potter that night.  Sad.\
Wednesday brought good news in that he ordered a tuna sandwich for breakfast and while he didn't eat much of it (who would at nine in the morning??) or much else that day, we did get him to drink 4 Carnation instant breakfast drinks. (A random interesting side note here is that the only other time that any member of our family has stayed in the hospital overnight was when I had intestinal complications after Dallin was born.  And ironically, the one thing that my poor stomach could finally tolerate was Carnation instant breakfast.  Hmmm, interesting, don't you think??) He got to call into the playroom and participate in Bingo via the television.  My friends Chandra and Alanna brought their families up for a visit and some laughs. Hugh and Cami came by at different times with movies and treats.  Our home teacher, and Uncle Kevin and Grandma and Grandpa Webb and even his school teacher came by.  And everyone brought him something.  He felt so loved and felt like he had another birthday.  It was absolutely amazing to me to feel that kind of love from people.
On Thursday to top things off, Marci brings up Dallin's best friend Grayson to see him and they actually get down on the floor and play.  It made me cry and I was so grateful to see him cheering up.  And then by around 4:30 when he still hasn't had a fever and is eating and drinking better, we get to head home.  We come home to a heart-attacked house and enjoy just being together as a family again. 
He has to keep taking a low dose of aspirin and we have to follow up with the cardiologist in a few weeks, but he looks so much better and I am so grateful.  We are in the process of trying to get a postponement for the cruise and hopefully someday I'll know why we weren't meant to go on that trip.  But for now, I am just happy for a healthy boy. I am so grateful for God and good medical peeps and amazing friends and family and for finally getting to see the bright eyes and beautiful smile of my Dallin again!
Going home!!

3 comments:

  1. I'm so sorry you're now dealing with guilt - about having fun while he was home sick, about debating whether or not to go on the cruise, and anything else. You're such an incredible mom. It sounds to me like you needed a little sunshine before sitting in the hospital worrying for the next few days. And it sounds like the cruise was just a way to lure in family so that your other kiddos would be taken care of during this fiasco.

    It was really great to see Dallin happy and playful at church again. I'm glad things are calming down and reasons for worry are fading.

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  2. I really thought a lot about you guys that week. I can't imagine the turmoil of deciding what to do, especially with a trip up in the air and not knowing if the sickness will pass quickly or be serious, it is so hard to tell. I always underplay sickness, but then feel guilty later if they turn out to be really sick. I am so glad he is feeling better and hope you guys can still go on your trip later. Glad you had so much support as well.

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  3. What a blessing to have so much support! And what a crazy experience to have him get suddenly ill... and have a built-in back up plan.

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